Marley’s doing great. She’s crawling, scootching, cruising, all of it. She’s completely unaware of the challenges she should be facing. She’s independent. Fierce. Totally over us helping! Typical toddler. She’s beautiful. Infectious with her smile. She’s everything I ever hoped for in our last child. She’s perfect.
We had a follow up appointment with Dr B. She’ll always be present in our lives- we’d follow her anywhere. We had xrays first as we always have. They stink- holding her down while covering her entire body with lead (per my request). She screams bloody murder. Except she’s not in pain- she’s just angry that we are holding her down. Then up to plastics. There are more people this time. Marley was in rare form. A mix of shy and coy with a giggle. She was was funny. But in the air lingered the truth. We’d be contemplating amputation.
It wasn’t two weeks ago that I’d heard him profess things about her. Things about her future and how perfect she is in our lives. It only matters to us, and things that whether hold true or not are significant only to him and I in that moment. And they are of value. Truth. Our reality.
A prosthetic is possible and their desire is one that she maximizes her useage early so she never knows what she doesn’t have there. So she doesn’t grow reliant on it. But once it’s done it’s done and there’s no going back. So we wait. Her fleshy chubby little fingers give her support when she crawls. While they don’t move and her bones are so curved essentially growing backwards she doesn’t care. She pulls her bow down off her forehead and strings the elastic delicately between her right fingers. They can’t grasp back but you can tell with her expression that it feels good.
With that they agree that waiting is it. She is intentional in her movements. She may be reliant but it’s not just limp. It’s present. But deep dark in the very corner of the space is a tiny reminder that what is there now may not be there in the future.
How reliant we are on you my God. My God.
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